I have a clinical diagnosis of Endometriosis, I feel like it doesn’t count? is my diagnosis as real?

[Coco1860]

Hi! New here. I was clinically diagnosed with endometriosis in January of this year without a laparoscopy. I was unsure of this diagnosis but my gynaecologist assured me she felt I met all the criteria and referred me to an endo specialist who said the same. I’ve had multiple transvaginal ultrasounds and all that. Because of the lack of laparoscopy, i’ve had some people say (who don’t have endo by the way) that they don’t consider my diagnosis as real because I haven’t had the laparoscopic surgery. It can give me impostor syndrome in a way; as I feel I don’t /really/ have endo, even though I have been told so by specialists. I try to remember that my pain is very real, I have been picked up by ambulances who thought I was in labour the pain was so severe, and I have fainted from the pain of my period many times along with countless other symptoms you’ll know all about. I’m interested to know how endo sufferers feel about clinical diagnoses, and whether you consider them as ‘real’ or not! It’s an interesting topic and I haven’t really heard much from endo sufferers themselves! Thanks!

[ZiggyandBC]

Hey lovely. I was first told it was ‘highly likely’ I had endometriosis after an endometrioma cyst was found during a transvaginal ultrasound. Although the consultant said it was highly likely to be endo I still needed a lap to confirm which I had back in June which confirmed I have endo and they managed to remove the cyst. Don’t listen to anyone else, they’re not doctors and if a specialist has told you that you have endo then you have endo! I think a laparoscopy just confirms where and how severe and can obviously treat it whilst they’re in there. Don’t let anyone make you feel like your pain isnt valid because it absolutely does. Sending lots of love ❤️

[ZiggyandBC in reply to ZiggyandBC]

Also just to add I really pushed for my laparoscopy because I wanted to have excision surgery to remove it all so my chance of IVF is higher 🙂 Once the specialist told me it was highly likely to be endo I already considered myself to have it before I had the laparoscopy xx

[Coco1860 in reply to ZiggyandBC]

Thanks so much. It’s so nice to hear that people who struggle with endo understand that diagnoses come in loads of different ways. I’m also pushing to get a laparoscopy as soon as possible to search for it quite deep, thankfully they didn’t find any cysts on my ovaries during the specialist ultrasound as I was worried about my reproductive health but that’s made me feel a little better.

I appreciate you! Sending lots of love right back ☺️❤️

[ZiggyandBC in reply to Coco1860]

Absolutely! Just because you haven’t had a lap doesn’t mean your pain isn’t valid and your diagnosis isn’t valid! I hope everything goes well when you get your laparoscopy 💖💖

[heatherevans28]

Your pain and symptoms are absolutely valid, and honestly unless it'd a medical professional then your diagnostic journey is none of their business.

That being said I would query what their treatment plan is. I had a clinical diagnosis for years from four different doctors (staff retention issues at the hospital). Nobody even doubted it to be honest as I ticked all the boxes and I got the coil while awaiting surgery which majorly improved things for me. However my laparoscopy was completely negative. No signs of anything at all. I was so upset my (now) husband genuinely thought something had gone wrong when he arrived at the hospital.

A lap is the definitive test for diagnosis as well as the gold standard treatment at the moment, so I would really question why your doctors aren't recommending it. I don't think the diagnosis matters as much as the treatment. That's the bit that will impact your daily quality of life. How are they planning to treat you? x

[Coco1860]

Hi! Thank you for your reply ☺️I absolutely have been querying their treatment plan as initially they told me to go on the pill for hormone and pain management (I can’t for other health reasons) and they gave me the choice between going on pain relief (tranexamic and mefanamic) until the pain gets worse and I have no choice but to have a lap, or get the lap straightaway. They strongly pushed for me to not get the lap YET so I went with their advice. However, recently I’ve been in contact with them again as my pain and other symptoms have been worsening and I have asked them outright to schedule my laparoscopy. Because the NHS has bad waiting times at the moment due to covid and underfunding I’ve been put on another consultation waitlist at the endo specialist gynaecology unit I’m already referred to. I’m not surprised at this at all because everyone here and everyone I’ve talked to in person about their endo has similar stories of having to wait ten plus years for a diagnosis let alone a laparoscopy, I’m 23 and feel lucky that I’ve got this far already.

Thanks again for your reply! Hope you’re well ❤️

[A5555]

I for one got diagnosed with a laparoscopy but the specialists told me that multiple people can be diagnosed using scans as growths can show up that way. That means that these people often won’t have a laparoscopy unless they’re seeking some type of treatment to alleviate symptoms x